Breaking New Ground in Palliative Care: Examining the Impact of Al Ain – Palliative Care Outreach Program on Patients With Advanced Cancer in the United Arab Emirates

Introduction This study aimed to evaluate the effectiveness of the Palliative Outreach Program in improving the quality of palliative care for patients with advanced cancer in a Tertiary Hospital in the Al Ain region of the United Arab Emirates (UAE). Methods & Material One hundred patients who met the inclusion criteria were included in the study and administered the patient version of the Consumer Quality (CQ) Index Palliative Care Instrument to assess their perception of the quality of care they received. The demographics, diagnosis, and questionnaire responses were analyzed to determine the effectiveness of the Palliative Outreach Program. Results A total of one hundred patients met the criteria for the study. Most patients were above 50, female, female, Non-Emiratis, and had high school certificates. The top three cancer diagnoses were breast (22%), lung (15%), and head & neck (13%). The patients reported high levels of support from their caregivers regarding physical, psychological, and spiritual well-being, as well as information and expertise. The mean scores for most variables were favorable, except for information (mean = 2.9540, SD= 0.25082) and general appreciation (mean = 6.7150, sd = 0.82344). Overall, the patients rated the care they received positively, with high mean scores for physical/psychological well-being (mean = 3.4950, SD = 0.28668), autonomy (mean = 3.7667, SD= 0.28623), privacy (mean = 3.6490, SD = 0.23159), and spiritual well-being (mean =3.7500, SD = 0.54356). The patients would recommend their caregivers to others in similar situations. Discussion The findings demonstrate that the Palliative Outreach Program effectively improves the quality of palliative care for patients with advanced cancer in the UAE. The CQ Index Palliative Care Instrument proved a novel method for assessing palliative care quality from patients' perspectives. However, there is room for improvement in providing more favorable information and general appreciation outcomes. Caregivers should focus on all areas to enhance their physical/psychological well-being, autonomy, privacy, spiritual well-being, expertise, and general appreciation of their patients. Conclusion In conclusion, the Palliative Outreach Program is an effective intervention to improve the quality of palliative care for patients with advanced cancer in the UAE. The patients reported high levels of support from their caregivers in all aspects of care, except for information and general appreciation. These findings provide valuable insights into the effectiveness of palliative care interventions and highlight the need for continued efforts to improve the quality of care for patients with advanced cancer.


Introduction
Palliative care places a premium on delivering patient-centred care. A fundamental component of this ethos is acquiring a comprehensive understanding of the quality of care from the patient's perspective. However, traditional approaches to measuring the quality of care, such as satisfaction surveys, are plagued by several drawbacks, including the lack of specificity in defining satisfaction, an inherent dependence on the individual's expectations, and the possibility of eliciting socially desirable responses. In response to these issues, a new generation of quality instruments has emerged, based on measuring actual care experiences. The Consumer Quality Index (CQ-index) represents one such structured questionnaire, which assesses the quality of care from the viewpoint of care users [1].
Distinct from conventional satisfaction-based measurements, the CQ-indices approach centres around evaluating a patient's actual care experiences in tandem with their expectations [2]. By juxtaposing the patient's experiences against their expectations, the CQ-index facilitates a more accurate reflection of the quality of care and provides a clear roadmap for quality improvement interventions. The CQ indices have been developed and used for diverse target groups, including patients with breast cancer, rheumatoid arthritis, and those receiving long-term care [3].
The need for a valid and comprehensive tool for assessing the quality of palliative care resulted in the creation of the CQ-index Palliative Care (CQ-index PC) by the Dutch Ministry of Health in 2007 [4]. The CQindex PC distinguishes itself from extant instruments by avoiding traditional satisfaction-based metrics and focusing on the importance of the patient's actual experiences. The CQ-index PC combines questions on actual experiences with questions about how important care aspects are to the patient, providing a more holistic and nuanced approach to quality assessment. By scrutinizing the relationship between 'experience scores' and 'importance scores,' the CQ-index PC offers granular insights into which care areas require the most urgent attention to effect quality improvement.
Palliative care outreach services are aimed at improving the quality of life and end-of-life care for patients in their preferred location, reducing the burden on family caregivers and improving communication between healthcare providers [5]. Several studies have explored the impact of these services on improving the quality of care for patients with advanced illnesses. One study showed that outreach services reduced healthcare costs, improved patient and family satisfaction, and decreased readmission rates in the Intensive Care Unit (ICU) [6]. Another study found that palliative care interventions for people with advanced dementia can address physical, psychological, and spiritual needs, leading to improved quality of life for both patients and caregivers [7]. A palliative care outreach team in India also demonstrated improved symptom management, emotional support, and communication with patients and families [8]. A systematic review and metaanalysis of palliative care outreach services for patients with cancer found improved symptom management, quality of life, and patient and family satisfaction [9].
Tawam Hospital stands out as a beacon of hope for those in need of oncology services in the United Arab Emirates (UAE). The hospital is a tertiary structured hospital that serves as national and regional referral center for oncology services and has taken significant strides to provide patients with the care and support they need during their journey.Tawam Hospital has the first Palliative Care Unit in the country, with a bed capacity of only 11 beds and the ability to serve up to 20 patients, therefore the Palliative Care Outreach program and Consultation Service were initiated to ensure that oncology patients receive the best possible care and palliative care service is extended to serve greater number of population within the Hospital. This paper presents the latest innovative approach to measuring patient experiences in the palliative care outreach programme, using the CQ-index PC as the primary instrument. This paper provides insights into patients' care experiences, quality aspects that patients value, and the care aspects requiring the most critical attention to enhance the quality of care. The CQ-index PC is a practical, patient-centric instrument for measuring quality indicators from the patient's perspective. Its adoption can offer vital quality information for healthcare organizations, patients, relatives, and external entities such as the Health Care Inspectorate. The CQ-index PC is a powerful tool for assessing the quality of palliative care and facilitating effective quality improvement interventions in diverse care settings.

Materials And Methods
The study presented has outlined clear inclusion and exclusion criteria for participants.
To be eligible for inclusion, patients must receive Palliative Care Service, have a life expectancy of six months or less, be 18 years or older, and consent to participate. Furthermore, patients must be physically and mentally competent and located outside the palliative care unit, with a study duration of one week.
Exclusion criteria include refusal to participate, patients in the terminal phase, and those who are mentally or cognitively incompetent.
Non-probability sampling, specifically convenience sampling, was used to obtain a sample size of 100 patients located anywhere in Tawam Hospital except the palliative care unit. The research design is a quantitative non-experimental descriptive design, which would provide valuable insights into the patient population receiving palliative care services in Tawam Hospital.
The study uses the Consumer Quality Index Palliative Care (CQ-index PC) comprehensive questionnaire. The CQ-index PC is a comprehensive questionnaire consisting of eight components, including Physical well-being, Psychological well-being, Autonomy, Privacy, Spiritual well-being, Information, Expertise of the caregiver, and General Appreciation. The questionnaire comprises 34 questions, with important items and experiences items measuring patient satisfaction with care. Patients rate the importance of care items on a four-point Likert scale and rate their actual care experiences on a four-point Likert scale, ranging from 'no/never' to 'always'. If a patient has not experienced a specific symptom, they can choose the option 'not applicable.' The study was approved by the Tawam Human Research Ethics Committee and the IRB approval number is THREC-668. The data were analyzed using Statistical Package for Social Science (SPSS), version 26, with descriptive statistics computed for the background characteristics, including frequencies, percentages, means (with 95% confidence intervals), and demographic data.

Age
Most of the patients (44%) were aged between 51-60 years and were followed by those above 60 years with 24% [ Figure 1].

Gender, Religion, Marital Status and Nationality
There were 57 females and 43 males with the majority (68%) of the respondents being non-Emiratis and there were only 32% Emiratis. This denotes the wide nationalities in the United Arab Emirates which caters to a wide variety of people from around the world. The majority [69%] of the patients belonged to the Islamic religion. Close to 67% were married [ Table 1].

Literacy and Education
Almost all patients were literate and a majority of them had a high school certificate and above [ Figure 3].

Physical Well Being
When asked about Physical Well Being, the results suggest that patients receive significant support from their caregivers, as evidenced by the favourable responses given to all questions, with over 50% of participants indicating agreement or satisfaction [ Table 2].

Psychological Well Being
The psychological component of the questionnaire was comprised of two distinct sections, one pertaining to the timeliness of healthcare provider (HCP) response to patient needs, and the other focused on the quality of the response provided. Across all measures related to psychological well-being, results indicated that over 50% of patients responded affirmatively, reporting good psychological well-being, which was attributed to the supportive care provided by their caregivers [ Table 3 & Table 4].

Patient Autonomy & Privacy
In relation to patients' autonomy, results indicated that all participants acknowledged varying degrees of respect for their autonomy, with over 75% indicating that their autonomy was always respected. Furthermore, more than 90% of participants reported that they were consistently included and involved in decisions about their care [ Table 5 & Table 6]. For privacy two questions were asked, 56% of patients indicated that they always had the opportunity to be alone if they wanted to, while 61% indicated that it was always possible to talk to someone without being disturbed [

Healthcare Giver Communication
On patient perceptions of the communication and information received in palliative care, the results indicated that a majority of patients reported that their caregivers effectively communicated with them, explaining things in a way they could understand (91%) and avoiding contradictory information (93%) [ Table  9]. Additionally, patients reported receiving adequate information about their illness, treatment options, and the contact person for their care. Notably, over half of the patients reported receiving information about the advantages and disadvantages of various types of treatment (61%)[

Healthcare Giver Competence -Patient Perspective
Close to 98% of the patients believed their healthcare provider had the necessary expertise and competence to care for them [ Table 11]. Results showed that a majority of patients reported good coordination of care between different caregivers (77%) and received timely help when in need of care (59%). Moreover, the vast majority of patients reported receiving help in good time in acute situations (73%) [ Table 12].

Most of them (%)
All of them (%)

General Appreciation for Care
When asked if the patients would recommend their caregivers to other patients who are in a similar situation, close to 85% were satisfied with the care provided and would recommend the healthcare giver to other patients.

Discussion
Palliative care is an approach to care that focuses on improving the quality of life of patients with lifelimiting illnesses and their families, by addressing their physical, psychological, social, and spiritual needs [10]. The goal of palliative care is to relieve suffering and improve the patient's quality of life, rather than to cure the underlying illness. Palliative care is usually provided by a team of healthcare professionals, including physicians, nurses, social workers, and chaplains [11].
One important aspect of palliative care is communication with patients and their families, which is essential for ensuring that their needs and preferences are met, and for promoting patient-centred care [12]. Effective communication involves active listening, empathy, and the ability to provide information in a clear and understandable manner. It also includes respecting patients' autonomy and involving them in decisionmaking about their care [13]. The results of this study indicate that patients received high-quality care from their caregivers in the palliative care outreach programme, with high levels of satisfaction and positive perceptions of their care. Patients reported that their autonomy was always respected, and they were consistently involved in decisions about their care. Patients also reported high levels of satisfaction with the communication and information provided by their caregivers. These findings are consistent with previous research showing the importance of effective communication in palliative care [14].
Another important aspect of palliative care is the management of physical symptoms, such as pain, nausea, and fatigue, among others. Effective symptom management is essential for improving patients' quality of life and reducing their suffering (6). One of the key findings of this study was that patients rated their physical well-being the highest, which suggests that their physical symptoms were well managed by their caregivers. Effective symptom management is a critical component of palliative care, as it can significantly improve patients' quality of life and reduce their suffering [15]. There are various pharmacological and nonpharmacological interventions available for symptom management, including pain management, nausea and vomiting control, dyspnea management, and others [16]. The goal of symptom management in palliative care is not to cure the underlying illness but to improve the patient's quality of life and relieve their suffering.
Management of psychological and emotional distress in patients and their families is very challenging and is as important as managing physical symptoms. Patients with life-limiting illnesses often experience anxiety, depression, fear, and other psychological and emotional symptoms, which can significantly affect their quality of life [17]. This study found that patients reported good psychological well-being, which was attributed to the supportive care provided by their caregivers. This finding is consistent with previous research showing the importance of addressing patients' psychological and emotional needs in palliative care [18].
Spiritual care is another important aspect of palliative care, which involves addressing patients' spiritual and existential concerns, such as their beliefs, values, and sense of meaning and purpose [19]. Spiritual care is particularly important for patients with life-limiting illnesses, as they often face existential questions and concerns about the meaning and purpose of their lives [20,21]. In this study, patients generally rated their spiritual well-being positively and felt that their caregivers respected their life stance. However, access to spiritual counselling was reported to be relatively low, indicating the need for improvement in this area.
Patient autonomy is another important aspect of palliative care, as it enables patients to make informed decisions about their care and treatment options, and to maintain control over their lives [22]. In this study, the patients reported that their autonomy was always respected, and they were consistently involved in decisions about their care. This finding is consistent with the principles of patient-centred care, which emphasizes the importance of respecting patients' autonomy and involving them in decision-making about their care [23].
Patient and family education is another important aspect of palliative care, as it enables patients and their families to make informed decisions about their care and to manage their symptoms and other concerns effectively. Patient and family education can include information about the patient's illness, treatment options, symptom management, and advance care planning, among others [24]. In this study, patients reported high levels of satisfaction with the communication and information provided by their caregivers, indicating the importance of effective patient and family education in palliative care.
Cultural and linguistic competence is another important aspect of palliative care, particularly in diverse and multicultural societies. The study you provided found that the majority of patients were non-Emiratis, indicating the need for culturally and linguistically competent care. Cultural and linguistic competence involves understanding and respecting the cultural beliefs, values, and practices of patients and their families, and providing care that is sensitive to their cultural and linguistic needs [25]. Failure to provide culturally and linguistically competent care can lead to poor patient outcomes, including decreased patient and family satisfaction and poor communication and collaboration between healthcare providers and patients and their families [26].
Finally, healthcare provider competence and expertise are important aspects of palliative care, as they ensure that patients receive high-quality and safe care. The study you provided found that almost all patients believed their healthcare provider had the necessary expertise and competence to care for them, indicating the importance of healthcare provider competence in palliative care. Healthcare provider competence involves having the necessary knowledge, skills, and training to provide high-quality and safe care, as well as the ability to communicate effectively with patients and their families [27].

Limitations
We acknowledge there are some potential limitations to the study and future studies may consider the following to overcome these limitations Small sample size and Single Centre Study: The study may have limited generalizability due to the relatively small sample size. With only 100 participants, it may be difficult to draw firm conclusions about the experiences of all palliative care patients. The study was conducted at a single centre, which may limit the generalizability of the findings to other palliative care settings. It is possible that patients at other centres may have different experiences and perceptions of care.
Lack of diversity: The study had a predominantly Muslim and married population, which may not reflect the diversity of patients in other palliative care settings. It is possible that patients from other religious or cultural backgrounds, or those who are not married, may have different experiences and perceptions of care.
The limited scope of the questionnaire: The questionnaire used in the study focused on a limited set of domains, which may not fully capture the complexity of patients' experiences in palliative care. Additional domains such as financial burden, caregiver burden, and social support could have been included to provide a more comprehensive picture of patients' experiences.
Cross-sectional design: The study had a cross-sectional design, which limits the ability to establish causality or determine changes over time. in the future, we are considering a longitudinal study design that would be better suited to examine changes in patients' experiences and perceptions of care over time.

Conclusions
Our study suggests that while most patients with advanced cancer receive palliative care that matches what they consider important, there is potential for improving care, particularly in addressing symptoms such as fatigue. We recommend giving more attention to possible symptoms and acknowledging that full symptom control may not always be achievable, particularly in the final phase of the disease. The study also highlights the importance of tailoring information about the expected course of the illness to individual preferences, as preferences may differ between patients and over time.
However, the study acknowledges that providing information about the expected course of the illness may be difficult, as the course may not always be predictable. The information provided should be broader than just information about the expected course of the disease. For instance, advance care planning should include opportunities for good care if a patient suffers from certain symptoms, as well as discussing the patient's perspective on end-of-life decisions about (potentially) life-prolonging or life-shortening treatments.
The study also highlights the usefulness of the CQ Index Palliative Care Instrument -Patient Version as a novel method for assessing palliative care quality from the perspective of patients. Organizations can use the findings to assess which care aspects have the highest priority for quality improvement within their organization.
General Practitioners (GP) and nurses have an important role to play in providing palliative care, and we recommend that they provide emotional support and practical advice even when symptoms are difficult to control. We also suggest that GPs discuss patients' need for information about the expected course of their illness.
Moreover, given the important role of GPs and home care nurses in palliative care, the results of the study suggest that it could be helpful to have insight into the extent to which their perspective on respecting autonomy and information provision matches that of their patients with advanced cancer.
In conclusion, palliative care is a multidisciplinary approach to care that aims to improve the quality of life of patients with life-limiting illnesses and their families, by addressing their physical, psychological, social, and spiritual needs. Effective communication, symptom management, addressing psychological and spiritual needs, respecting patients' autonomy, providing patient and family education, cultural and linguistic competence, and healthcare provider competence are all important aspects of palliative care that can improve patient's quality of life and reduce their suffering. We also highlight the practicality of the Palliative Outreach program as a model for integrating palliative care into general services to serve oncology and non-oncology terminal patients. Finally, we suggest that palliative care should be offered based on need rather than diagnosis, setting, economic restrictions, or cultural perspective. Future research is needed to further understand the unique needs and challenges of palliative care in different cultural and societal contexts.

Additional Information Disclosures
Human subjects: Consent was obtained or waived by all participants in this study. Tawam Human Research Ethics Committee (T-HREC) issued approval THREC-668. The approval for the study was sought and received in 2019. Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue. Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work.